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Is anyone else dealing with a neurogenic cough?

Posted by camayeron @camayeron, Feb 18 10:24am

I have been a patient at Mayo for about two years. After meeting with a pulmonologist , allergist, gastroenterologist, and ENT specialists; and trying a variety of treatments, I am still coughing. I have had three laryngeal blocks. It helps somewhat, but I’m still coughing. The diagnosis is “neurogenic” cough. It’s not a simple cough. It’s a body wracking, continuous, harsh cough that can take away my ability to speak or have any volume to my voice. It severely limits my ability to socialize; the cough is irritating to other people and makes others very uncomfortable. They can even get angry listening to it, although I usually don’t have any control over it. Ricola cough drops with honey and herbs help. I I know this is a rare problem, but I would love to know if there are others out there and how they are faring.

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bankceo1 | @bankceo1 | Sep 27 1:42pm

Gabipentin has reduced severity of the coughing episodes for my wife. She is getting Bravo test to determine if Reflux is the main issue or neurogenic cough. Suggestions and thoughts most welcome.

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baguette | @baguette | Sep 28 10:48am

I hope you have found relief since you posted. If not, herre is a link to an article by an ENT that may provide helpful information, including near the end of the article how to resolve it depending on the cause: https://jamiekoufman.com/what-is-a-neurogenic-cough/

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jbangos5 | @jbangos5 | Sep 29 10:38am

I have had the same situation for 15mths after getting sick and I saw Dr. Pascual-Pulmonologist at Mayo Clinic.
After every test you can imagine with my local GI, ENT, Pulmonologist and breathing test etc., he diagnosed me with Neurogenic Cough and gave me Amitriptyline 10 mg. start one at night per week then increase to 2,3,4 if needed until cough subsides. Within the first week the cough was almost completely gone. I went to 3 pills and I believe it is completely gone. I will remain on med for 2-3 mths and then see Dr. again.
It saved my life. It was horrible in every way to have this cough control my life. I am so grateful to Mayo Clinic.

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jbangos5 | @jbangos5 | Sep 29 10:40am
In reply to @mexikaren "I went through similar exhaustive testing in Denver at National Jewish. There have been other threads..." + (show)
Profile picture for mexikaren @mexikaren

I went through similar exhaustive testing in Denver at National Jewish. There have been other threads here on this issue. I also tried laryngeal blocks that were not helpful. Currently I take 35 mg amitriptyline at night. It usually works for 2-3 months, then I switch to tramadol twice daily when the amitriptyline stops working. Switching back and forth with these meds seems to work pretty well for me. It keeps me about 80% cough free. I recommend you work with your ENT to try different solutions. My ENT calls us his chronic coughers. You are definitely not alone in this!

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I have had the same situation for 15mths after getting sick and I saw Dr. Pascual-Pulmonologist at Mayo Clinic.
After every test you can imagine with my local GI, ENT, Pulmonologist and breathing test etc., he diagnosed me with Neurogenic Cough and gave me Amitriptyline 10 mg. start one at night per week then increase to 2,3,4 if needed until cough subsides. Within the first week the cough was almost completely gone. I went to 3 pills and I believe it is completely gone. I will remain on med for 2-3 mths and then see Dr. again.
It saved my life. It was horrible in every way to have this cough control my life. I am so grateful to Mayo Clinic.

I was wondering what will happen after 2-3 mths. I pray it does not come back.

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jojo1963 | @jojo1963 | Sep 29 11:07am
In reply to @danielleo "I’m so glad to find this space. I’ve been dealing with a chronic cough for over..." + (show)
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I’m so glad to find this space. I’ve been dealing with a chronic cough for over a year. Like others have mentioned I have tried cough suppressant, inhalers, allergy medicine, acid, reflex meds and none work. I’ve seen a pulmonologist done breathing test and chest CT. I’ve tried different types of inhalers because they thought it was asthma. Nothing seems to work. Finally, my pulmonologist referred me to ENT. I saw them last week and after speaking with them about what I’ve been dealing with for the last year, and all the things that I’ve done and tried, he diagnosed me with neurogenic cough. He said that it goes undiagnosed quite a bit. He put me on amitriptyline 10 mg that I increase every five days until I get to 80 mg but can stop at the dose that seems to lessen my cough by 80%. Praying this works, it has disrupted my life quite a bit. People I work with constantly think that I’m sick and I have to explain that I feel fine and it’s just a chronic cough. Being in public and coughing people stare at you like you must have Covid. It’s disrupt to sleep and daily activities. For those of you that have been dealing with this for 20 years, I’m so sorry. I cannot imagine looking back 20 years from now still dealing with the same cough. Hoping we all find something that works.

By chance have any of you been diagnosed with an autoimmune disorder? I have been and I’m wondering if this cough has anything to do with it.

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@danielleo I have not been diagnosed with an autoimmune disease. I have tried amitriptyline without success. Also, gabapentin with no success. Tried the nerve block once with no success but they are saying, at least they were a few months ago, that you need at least 3 sessions with the nerve block. Tramadol is the only thing I have found to work well for me but is becoming less effective and I have to take more to get the same relief now.

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cae48mle | @cae48mle | Oct 1 3:05pm

Hi, I have been dealing with chronic cough for at least 25 years! Nothing seems to work. I always carry my water bottle and a bag of cough drops. Someone gave me the book, "The Chronic Cough Inigma", by Dr. Jamie Koufman. She talks about the different types of cough in patients. One of them, neurogenic cough. Two medications she mentioned are, Option 1: Amitriptyline (Elavil) OR Desipramine (Norpramin) ...
Option 2: Gabapentin (Neurontin). Recently, I've been having issues with my cervical spine, nerve pain from a bulging disc. I started taking Gabapentin 300mg. 3 x a day for the nerve pain. After a few weeks, I noticed I wasn't cough much at all. From all I have been reading about gabapentin for cough, the doses needs to be titrated up and down. I am going to speak to my PCP about this....

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theo68 | @theo68 | Oct 25 4:21pm

Hello, I am so happy I found this group! I've been dealing with chronic cough for over 25 years. It was sporadic at first, a cough drop would help. Then it got more persistent, I'd start coughing and that would turn into gagging, but it wasn't every day all day. I did notice that in October the cough would get even worse and I'd get a wicked sinus infection. In 2004 my ENT suggested surgery due to the number and severity of sinus infections-said it could help the coughing. It did for a while. But once it came back it was the same. I've had allergy shots, pulmonary tests, GI tests for reflux, Rx'd Gabapentin and every allergy med under the sun and nothing. I was prescribed Tramadol for back pain, back got better so I never took it. One night I finally took one for a few nights bc of a gym injury. My husband noticed I didn't cough throughout the night and we couldn't figure out way. I stopped the tramdol after a few days bc the gym injury resolved, cough was back. We figured maybe the tramadol had helped the cough. It had! Took tramadol for a while but many doc's don't want to write the Rx, but my Ortho was fine for a while and then my GP said he could. Ortho retired last Dec and my GP just retired in July; figured that was it for Rx so I stopped taking it this May and for a about a month afterwards I wasn't coughing. But once it came back, it's back with a vengeance! I really don't want to re-start the tramadol bc it was awful stopping it, but I can't sleep, eat, or drink in peace. Perfume, cold air, hot air, spice, cleaning supplies, almost anything makes me cough. Covid was made extra bad by trying to hold in a cough! This is miserable!
Y'all I am super glad that I wasn't the only one that found tramadol helped.

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